Small glimmer of hope in brave boy’s health battle
TEENAGER Jarrah Jones has returned to the small comforts of being close to home after 380 days stuck inside a bleak hospital ward.
The 14-year-old, already facing the possibility of life in a wheelchair with quadriplegic-symptoms, is fighting an uphill battle as his body comes to terms with a rare debilitating illness.
Young Jarrah was diagnosed with Wilson's disease.
His body is unable to dispose of excess copper.
The family have created a GofundMe Page to help raise vital funds for a specialist vehicle for Jarrah, more than $11,000 has been raised.
Queensland Children's Hospital brain injury rehabilitation specialist Dr Kim McLennan said the disease generally presented in the liver, but Jarrah had copper deposits found in his eye and brain.
His family are staying in temporary accommodation while a new home is built using funds from the National Disability Insurance Scheme.
Jarrah's mother Nathalie Brouard said while the wait to be in the specially-designed home had been frustrating, she said just being back in the family's home town of Amamoor had worked wonders.
"He's making improvements every day, his muscles are relaxing and he is in less pain, being able to see his friends and family have made him a lot happier," Ms Brouard said.
"Everyone who meets Jarrah, they say his smile is contagious.
"His spirit is still there even though he can't communicate, I am pretty proud of him."
Dr Kim McLennan said Wilson's disease was not uncommon, but it was very rare to see it in a brain.
When Jarrah's treatment started, his symptoms became worse, with the 14-year-old suffering from symptoms similar to that of Parkinson's disease.
"He is essentially now a quadriplegic," Dr McLennan said.
She said the year had been a difficult one but that Jarrah had made progress.
"Absolutely, he has been so brave," she said.
"It's very hard for him to communication but you know he is in there, he can let us know if he is happy.
"He's using his eyes, his gaze to indicate, smiling and expression."